Sunday, January 30, 2011

Even though Alex is on a restricted gluten-free and casein-free diet, he is a good eater with a healthy appetite. We are fortunate that he not only understands he cannot eat foods that contain glutens (such as wheat) or milk products, but he is also willing to try a variety of meats, vegetables, and fruits. Moreover, he likes rice, which is his staple grain item. The only foods he will not eat are popcorn and mashed potatoes, and he’s not crazy about broccoli. In addition to breakfast, lunch, and dinner, Alex has instituted three snack times per day at regular intervals: around 3:30 in the afternoon during the first commercial break of the game show Jeopardy, 8:00 in the evening (which he sometimes refers to as dessert), and 9:00 in the evening. This final snack time is in conjunction with his nightly supplement pills, which he prefers to take with food. Although we have gone through times when Alex was indecisive and had trouble making up his mind what he wanted, he now likes to be offered choices of what he can have for a snack, and he quickly chooses from the options we give him when he asks.

Since most baked goods contain wheat flour and milk, Alex can’t eat those for snacks, but he sometimes likes to have the Kinnickinnick Toos, which are gluten-free and casein-free sandwich cookies that are tasty. Recently, I found a recipe for peanut butter fudge he can eat that is easy to make, and he loves it. I just microwave a 16 ounce jar of creamy peanut butter for one minute, and then microwave a 16 ounce tub of Duncan Hines classic vanilla frosting for one minute. After that, I stir the two ingredients together, pour the mix into an 8 x 8” pan sprayed with Pam cooking spray, and put it in the refrigerator to cool. I was delighted to find such an easy recipe, and he was happy to have a sweet treat for snacks. While Alex doesn’t eat most candy because it often contains milk products, he does like to eat marshmallows, especially Kraft marshmallows that are in special shapes. Before Christmas, they make marshmallows in pale green Christmas trees and pastel red stars. The other day I bought him a bag of heart-shaped strawberry marshmallows made for Valentine’s Day. He is also a big fan of marshmallow Peeps and likes the various shapes they make for holidays: blue bunnies for Easter, pink Valentine hearts, orange jack-o-lanterns for Halloween, and snowmen for Christmas. One of his quirks is that he likes his snacks in threes or multiples of three; for instance, he wants to have three Peeps marshmallow treats or six Kraft marshmallows, which are smaller than the Peeps. I’m guessing that the choice of three and its multiples has to do with his love of pi, which, of course, begins with three.

Besides sweet snacks, Alex also likes fruit, including bananas, apples, oranges, and grapes. He especially likes to eat grapes with Ed when they are watching sports on television. Alex will wait patiently until Ed offers him some grapes and then happily gobbles them down. He reminds me of a dog watching and waiting for people to drop their food so that it can have a snack of its own. Most of the time Alex prefers to eat his snack sitting at the kitchen table. When one of his snack times is imminent, he’ll walk to the kitchen and pace, waiting for us to offer him something to eat. If we don’t catch his pacing as a clue, he’ll come ask us, “How ‘bout a snack?” to remind us that he’s hungry. He also prefers to eat most snacks, other than chips, marshmallows, and cookies, with a fork, probably because his sensory issues make him dislike touching food and getting his hands messy. Other than when he’s sharing grapes with Ed, he eats all kinds of fruit with a fork, and he even eats his peanut butter fudge with a fork instead of just picking it up and taking bites of it. Recently, he broke away from a rigid routine of snacking by eating Tostitos round bite-sized tortilla chips directly out of the plastic container we use to store them instead of picking out six perfectly round ones with no broken edges and lining them up on a napkin. While this may not seem terribly significant, I see his willingness to break from a compulsive pattern he’s had for years as progress. By not lining them up and by eating more than his usual self-allotment of six chips, he’s moving away from the autism stereotype of needing to do things the same way all the time. An added bonus is that he’s willing to eat all the chips in the bag, even the broken ones, which means that it’s no longer up to Ed and me to finish off the bag for him. Fortunately, he can eat whatever he likes and remain slender, which is a blessing for someone who likes to eat six times a day, and Alex seems to savor his snacks, just as he does his meals.

“The godly eat to their hearts’ content, but the belly of the wicked goes hungry.” Proverbs 13:25

Wednesday, January 26, 2011

One of my favorite episodes of the television show Seinfeld includes a subplot about George’s father, Frank Costanza, creating an alternative holiday to Christmas that he dubs “Festivus” after becoming disenchanted with the holiday season. Once he has family and friends gathered around the table, he launches into the following explanation about the first ritual of this unconventional celebration: “The tradition of Festivus begins with the airing of grievances. I got a lot of problems with you people! And now you’re gonna hear about it!” Since Alex doesn’t really follow television shows with plot, as he prefers to watch game shows and sports, I doubt that he has seen that particular episode. Nonetheless, he has been honoring that tradition of Festivus lately, launching into complaint sessions at times and letting us know about things that displease him. Like a volcano, we have some forewarning that he is about to erupt into a verbal tirade because he sets his chin in a determined manner, narrows his eyes, and begins muttering before he’s ready to tell us what currently displeases him.

The other day, I was treated to one of Alex’s gripe sessions, which began with his complaint about not having a driver’s license, even though he’s now nineteen years old. Understandably, he has a right as a teenage boy to be unhappy that he can’t drive. However, his lack of motor planning skills makes him a danger behind the wheel, not to mention that his strong political opinions might lead him to be distracted, should he see a bumper sticker for a candidate whose opinions differ from his own. To address his complaint, I simply told Alex that until he can tie his own shoes, we weren’t going to discuss learning how to drive. That quieted him immediately, and he didn’t argue the point any further. Unfortunately, he had some other things on his mind that he wanted to let me know. Apparently, in 2008, I earned 2490 phone call points in his phone call game [which I described in an earlier blog entitled “Phone”], and that makes him upset. In addition, he thinks that an anti-aging medicine won’t be created until 2100, which concerns him. While he was on his soapbox, he also grumbled that he had only watched eight episodes of Jeopardy when Ken Jennings, who is one of Alex’s idols because he holds the record for winning the most days on Jeopardy, was on the game show. Even though I know for certain that Alex watched every single episode during Ken Jennings’ seventy-four day streak—and even watched some episodes twice by watching it on a different channel later in the day—I knew better than to argue with him when he was in this pugnacious mood. From there, he launched into more aggravation about phone call points, giving specific dates, length of calls, and phone call points earned, naming about thirty different occasions when I annoyed him by talking on the phone longer than he thought I should, going as far back to incidents in 2005. Although Alex has an excellent memory, I strongly suspect that he was making up most of the data because he seemed somewhat annoyed if I asked him whether a date, time, or phone call point tally was exact or approximate. In fact, I even caught him giving some contradictory information at one point. As author Mark Twain once said, “If you tell the truth, you don’t have to remember anything.” Nonetheless, I pretended to believe him, which helped ease his irritation with me over his perception that I have spent too much time on the phone over the years.

These complaint sessions actually reveal progress in Alex for various reasons. First, he appears to have learned to control his temper. Even when he seems angry or indignant, he can control himself by limiting his outbursts to verbal griping instead of physically letting me know he’s upset by grabbing or hitting me to get my attention. I suspect this is a maturation issue but also a sign that he feels more comfortable using expressive language to tell his thoughts and feelings. Rather than keeping his concerns to himself, he feels the need to share them with someone else, which is a social skill. Even though I don’t always understand why certain things bother him, at least he can tell me about them. I have learned that the best way to handle him when he needs to complain is to encourage him to talk about all the things that make him unhappy. As he verbally unloads his various pet peeves, I often write down the details, which he likes because he feels that I’m taking him seriously since he writes down things that are important to him. In addition, I will ask him questions about what he has said so that he knows I’m paying attention to his concerns. Finally, as he reels off his various complaints, I keep asking him, “Is there anything else?” to give him the opportunity to get everything off his chest. When he finally reaches the end of the list, he’ll sigh and tell me he’s done. The process of the airing of grievances seems to be cathartic for him, and when he finishes, I’m relieved that Alex feels better and that we have come through another Festivus celebration of our own without incident.

“I will climb up to my watchtower and stand at my guardpost. There I will wait to see what the Lord says and how He will answer my complaint.” Habakkuk 2:1

Sunday, January 23, 2011

Last month, I explained in my blog entry “Change” that the beloved doctor who had taken care of Alex and me for several years decided to retire because of her own health issues. While I knew with her increasing age that this event was an eventuality, I was still sad to lose the medical advice of someone I not only trusted and admired, but also genuinely liked as a person. The rapport we had established over the years was something I knew was a blessing, and I appreciated that she always listened earnestly and sympathetically to my concerns. Moreover, her holistic approach to medicine, using supplements and unconventional treatments, such as cranial therapy and chelation, was similar to the methods being used by the Defeat Autism Now doctors, whose biomedical research I follow faithfully. Under her guidance, we tested Alex for various issues, put him on a gluten-free and casein-free diet, rid his body of toxic metals through chelation, treated him for yeast overgrowth in his digestive system, implemented vitamin B-12 injections to heal his nervous system, and improved his behavior and sleep by giving him supplements that calm him. I’m convinced that without her interventions and support of the methods I wanted to try with him, Alex would not be as healthy and well-behaved as he is today.

After my initial disappointment of losing such a special doctor, I began searching for a new doctor for Alex, asking family and friends for recommendations, and decided to take him to Ed’s doctor, who is also the family doctor of my sister’s family and some of my friends. Because Alex was a new patient, we had to wait nearly a month before I could make an appointment to see the new doctor. Alex had been to our previous doctor last summer for a complete physical and had received a clean bill of health, but I wanted to establish Alex as the new doctor’s patient in case he became sick and needed to see him right away. In addition, I thought we should explain Alex’s autism and how it impacts his health and daily living. The month wait was actually a blessing because Alex had been dealing with some strange obsession about wanting to change his voice, and even going so far as to want surgery to make his voice pitch higher, like a child’s. Not only did this offbeat idea drive us crazy as Alex constantly discussed it, but the obsession became scary when he briefly decided that he’d like to have brain transplant so that he could have a little kid’s brain. Fortunately, his Frankenstein notion didn’t last long, but he kept talking about wanting to ask the doctor about voice surgery. A couple of weeks before the doctor’s appointment, Alex suddenly—and thankfully—quit talking about having his voice altered. In preparation for seeing the new doctor, I went through my records of Alex’s medical history so that I could detail any important information. In addition, I had obtained copies of pertinent tests and notes from his previous doctor to give to the new doctor, and I typed up a list of his current medications and supplements for his new records. When his appointment arrived this week, I was ready, and Alex was eager to go, happy hopping through the house as though we were taking him to the circus, just as he does with any new situation that he sees as an adventure.

When we arrived at the doctor’s office, I was impressed by how smoothly the office ran and pleased we didn’t have to wait long. However, I was surprised by how little information was requested regarding medical history on the forms I filled out prior to seeing the doctor. Alex happily watched as I wrote down the basic information regarding his name, address, phone number, emergency contacts, and insurance, and he was pleased to remind me of his social security number and to sign the form at the bottom. When the doctor’s nurse looked over Alex’s list of supplements that I had carefully compiled, she looked at me askance and said, “I don’t know what half of these are.” While my first thought was an offer to teach her what they were, her facial expression suggested that I’d better keep my thoughts to myself. Then she commented that the former doctor had her patients on all kinds of weird things, and she asked me, “Do you plan to keep him on all that stuff?” I assured her that I did because they helped Alex. She looked at me as though I had said I planned to dance around fire and asked if I knew where to get the supplements. I told her I did, and she just sighed. While this was not an auspicious beginning to the appointment, I bit my tongue and fought my need to explain biomedical interventions in autism. When the doctor came in, he was pleasant and asked us several questions regarding typical health issues, and we told him that Alex is remarkably healthy. After examining Alex and looking over his latest blood test results, he agreed that Alex is quite healthy but suggested that he have annual flu shots. When I told him that Alex had problems with heavy metal toxicity, so we avoided shots with preservatives, he didn’t push the point. Perhaps he agreed with me, or perhaps he thinks I’m one of those crazy autism moms. Nonetheless, I liked his calm, easygoing manner and think he will be fine for Alex. The best thing, however, was that Alex’s behavior was excellent. He was pleasant and cooperative the entire time, other than having difficulty in opening his mouth wide to have his throat examined and his misunderstanding of what taking deep breaths means when the doctor listens to his lungs—he kept saying, “AHHHH” instead. All in all, it was a good first visit: Alex didn’t make a bad first impression by asking for voice-changing surgery or a brain transplant, and my prayers were answered in that Alex received another good report from the doctor.

“A cheerful look brings joy to the heart; good news makes for good health.” Proverbs 15:30

Wednesday, January 19, 2011

In my last blog entry “Recommended,” I mentioned that Amazon. com sends me e-mails on a regular basis called “Recommended for You” that suggest items I might like to buy based upon my purchase history on their website. However, these recommendations are actually geared for Alex because he is the avid Amazon shopper; I’m just the one who places the orders for him online. The most recent “Recommendations for You” list included the following items: Dictionary of Computer and Internet Terms, a digital light meter, a Math Shark electronic game, and a Robot Claw toy. Frankly, it’s a little eerie how well they know my son and his idiosyncratic interests. I think he’d like all of those suggestions, but the only one that really intrigues me is that Robot Claw. However, I would be curious to see what lists they’d come up with for me if they knew my buying habits instead.

One category of recommendations would likely be cleaning supplies. Over the years, I have tried a number of products to make my life easier with cleaning up after Alex, especially since toilet training him took years. While none of the companies who make these products are compensating me for their endorsements, I sing their praises nonetheless. For its ability to suction up fluids quickly and easily, the Bissell Spot Lifter portable carpet cleaner is a handy tool to clean up messes from all types of floor surfaces. After cleaning up the mess, Woolite pet stain remover not only removes stains but the odors that accompany the source of those stains. Before Alex was toilet trained, we went through so many spray bottles of that stain remover someone might think we had a house full of pets. After the carpets dry, another great product is Arm and Hammer baking soda carpet deodorizer, which keeps rooms smelling fresh while being safe for pets and children. Similarly, regular baking soda is a wonderful addition to laundry products. After doing many loads of Alex’s clothes and bedding after he had toileting accidents, I found that baking soda removed any odors completely. Also, when he went through a phase of chewing on his shirt collars, baking soda in his laundry kept his shirts from reeking of bad breath odor. While these products saved our carpets and laundry, one of my favorite recommended cleaning products are Mr. Clean Magic Erasers. Although I tend to be suspicious of anything described as “magic,” these handy sponges are everything they claim to be. From wiping off handprints to stuck-on food stains, the Erasers easily clean without damaging surfaces. My favorite use for the Mr. Clean Magic Erasers, though, is wiping boogers off walls. While I don’t need to explain how I know this use, I will add that I have considered putting NASCAR tear-off windshields on the wall next to Alex’s bed. For those who are not NASCAR fans, the race car windshields have several clear vinyl covers over them that they tear off during pit stops. This is a faster way to remove debris than cleaning the actual windshields. If I had those tear-offs, I wouldn’t need the Mr. Clean Magic Erasers, but I doubt that they market tear-off windshields for household use.

Besides products that I would recommend for conventional uses, my list would include common items for unconventional uses in the household where a child with autism lives. For example, the NUK Healthy Start training toothbrush set is intended to keep a baby’s gums and emerging teeth healthy. We used the NUK rubber-tipped brush with Alex even after he had permanent teeth as a way to decrease his sensory issues by gently rubbing the roof of his mouth with it. Similarly, the Slinky is a classic toy for most kids that can go up and down stairs, but holding the Slinky in both hands and shifting the coils with their soft clicking noise calms Alex as a sensory device. Another typical item we used to calm Alex when he was younger was a simple calculator. I always carried one in my purse, and if he became anxious or bored when we were out in public, I’d hand him the calculator. He’d happily press the buttons [and was probably doing calculations before we recognized his savant math skills] and keep himself occupied. The calculator has now been replaced by handheld electronic games and Ed’s iPod when Alex needs something to keep him busy while he waits. Trying times pushed us into figuring out solutions to problems, and we came up with a couple of common objects that helped us tremendously. When Alex was having meltdowns during his turbulent teen years, he’d often scratch and pinch us. To prevent that, we discovered that oven mitts limited his ability to hurt us. We kept pairs of them throughout the house so that when he became agitated, we’d tell him he need to put them on to keep his hands warm, and he couldn’t scratch or pinch with those padded hands. Sometimes, he’d even fall asleep wearing them. When he went through sleepless times, we didn’t want him wandering through the house, and we really didn’t want him getting in the habit of sleeping in our bed. Buying an air mattress to put in his room as a temporary bed for one of us to stay with him until he fell asleep was a simple solution to a big problem. They say, “Necessity is the mother of invention,” and I would say that being the mother of a child with autism has made me much more inventive—thanks to God’s help—than I would have ever thought. If Amazon ever comes up with a “Recommended for You” list geared for autism moms, I’d be curious to see what else they might include, but I’m still keeping my fingers crossed for those tear-off windshields.

“O Lord my God, You have performed many wonders for us. Your plans for us are too numerous to list...” Psalm 40:5

Sunday, January 16, 2011

The other day I received an e-mail from Amazon.com with a detailed list of suggested items entitled, “Recommended for You.” These e-mails appear in my inbox every few weeks, and I always find them interesting because they have analyzed previous orders and come up with similar yet different items they would like to sell me. What is especially intriguing is that they don’t realize these recommendations are actually for Alex; I’m just his personal assistant who orders online for him and tracks the package when he asks. With its wide variety of books, electronics, toys, and games, Amazon holds special appeal for Alex because he can find nearly anything he’d like to own. Having mastered their search function, he enjoys looking through the various possible options, comparing prices, weighing which is best for him, and then negotiating with me as to whether he can order his desired objects. Although I don’t always understand quite why he wants some of the objects he finds on Amazon, I am always impressed with the imagination Alex shows in coming up with various gadgets and the specifications he requests that they have. Moreover, he does know what he wants because the items he chooses usually become particular favorites of his that he carries around and uses often.

Since Alex likes numbers, statistics, and weather, we have a variety of thermometers around the house so that he can monitor the temperature. A few years ago, he began checking Amazon to see what kinds of thermometers they carry and found one he knew he had to have, a non-contact infrared thermometer with laser targeting. While this sounds like something from a science-fiction movie, it’s just a thermometer that can be pointed at an object to determine its temperature using a laser. Alex was impressed with its digital display, but the real selling point was that its description included the range of temperatures it could measure: from -76 to 932 degrees Fahrenheit. I suspect that he was hoping to test the extremes of the range, but that was not going to be an option. However, once the thermometer arrived, we found him with his head stuck in the refrigerator and freezer, checking the temperatures there. Another day, I discovered the plastic end of the thermometer had melted slightly. When I questioned Alex what had happened to it, he admitted that he’d been testing the temperature of light bulbs when they are turned on and had gotten too close. He can sit for long periods of time on our back screen porch measuring the warmth of the sun’s rays as they shine on the floor out there, and he likes to note the changes as the angle of the sun shifts. One day, I opened the dishwasher and discovered that he’d put the thermometer in the top rack of the dishwasher to measure the temperature of the water when the machine was running. Unfortunately, the thermometer is not water resistant, but after a couple of days of drying, the gadget was as good as new. At least Alex was smart enough to put it on the top rack of the dishwasher; I’m not certain that it would have survived a round in the bottom rack. Nonetheless, despite all the various experiments that thermometer has endured, as evidenced by its appearance, it still provides Alex with hours of entertainment, proving that he knew what he was doing when he decided to order it. Another gadget he found on Amazon that he has enjoyed thoroughly is a stopwatch. When he decided he wanted a stopwatch, he carefully compared and contrasted his options before deciding upon one that measured to 1/1000th of a second. His need for precision and accuracy made him opt for this model over the more common ones that measure to 1/100th of a second. While most people use stopwatches for timing sports events, Alex prefers to use his to measure the exact length of television commercials and You Tube videos. In addition, when he is watching NASCAR races on television, he sometimes measures the length of pit stops with his stopwatch being more precise than the ones shown on the television screen. If Jeff Gordon’s pit crew wants to know exactly how fast their stops are, Alex could tell them.

In addition to electronic gadgets, Alex also enjoys searching for unique books on Amazon. One of his all-time favorites is Pi: A Source Book, nearly 800 pages (exactly 797 pages, according to Alex) of articles about the mathematical concept of pi, one of his favorite topics. I believe he has read nearly all of this long book, and he has read some sections repeatedly. My favorite part of the book is the pi song, complete with music and lyrics. A few weeks ago, Alex decided that he would like a 1996 World Almanac to add to his collection. For several years, he has received a World Almanac for the upcoming year as a birthday or Christmas gift, and he consults these reference books many times a week, to the point their pages become bent and their covers fall off. Nonetheless, these well-worn books remain in his collection for reference. When he told me he wanted the 1996 almanac because it was the year of his earliest memory, I asked him if he already had one. He assured me that he did not and then went on to recite the years of the almanacs he does have. Thankfully, Amazon did carry this out-of-print book through their book dealers, and for less than four dollars, Alex obtained his desired book, which he has enjoyed reading, perhaps stirring memories of those early years. Although children with autism are sometimes said to lack imagination, Alex’s creativity in coming up with ideas for gadgets and books he’d like to have defies that stereotype. Moreover, his ability to research and find what he wants, as well as to show good consumer skills by determining the best value, makes me proud to be his mother and his personal shopper.

Wednesday, January 12, 2011

With bitter cold weather over the past few weeks here in Northwest Indiana, Alex has been spending his spare time inside. I’m sure that he, like Ed and me, misses being out on our three-season porch reading and relaxing. Also, he probably is in withdrawal from roaming around our backyard, counting the pickets in our fence, watching our neighbor’s dog bark at him, and throwing a ball up into the air and counting how many times in a row he can catch it. Nonetheless, he seems to be dealing with cabin fever better the past couple of weeks. One would assume he’s entertaining himself with the variety of nice birthday and Christmas presents he received last month, and, of course, he has enjoyed them. But, like a typical child who seems more interested in the empty box than the present that came in it, Alex is finding fun in unusual items that he uses in his idiosyncratic ways.

Last week, my mom, Alex, and I went out to a restaurant for dinner while Ed and my dad went to a basketball game and a fans’ dinner served before the game. Lately, when we take Alex out to a restaurant, Ed brings his iPod, which he has loaded with various applications that Alex especially likes, including the game Deal or No Deal, Blackjack, Roulette, Texas Hold ‘Em Poker, and even a pi digit calculator. While we’re waiting for the meal, Alex and Ed pass the time playing on this handy little gadget. Since I don’t have an iPod, I didn’t think to bring something for Alex to play with when we went to the restaurant the other night. However, he was fairly patient waiting for his meal. After a few minutes, I noticed that he started pulling out the container of three different artificial sweeteners and looking at the packets. Figuring that he just wanted to read them, I watched as he began moving them into patterns on the table, creating an activity of his own. He placed one packet on a top row, followed by nine packets below that, then nine more below the second row, and finally six packets on the bottom row. He seemed pleased with his efforts, and he was even more pleased when I asked him if that meant the year 1996. [This was not just a lucky guess on my part; I happen to know that he’s somewhat obsessed with the year 1996, which he’s decided is the year of his earliest memory.] I’m not certain which was scarier—that he figured out a way to create an abacus out of those pastel packets of sweetener or that I immediately knew what he was trying to represent by the lineup he’d created. At least that activity kept him occupied and happy until his food arrived.

Of all the gifts he received last month, one that seems to be a favorite of Alex’s is the set of magnetic numbers I found in a clearance bin for twenty-five cents. Besides having two numbers of each digit, the set came with mathematical symbols: plus, minus, times, divided by, and equals. Knowing how much he loves math, I suspected that he’d find various ways to put this set together, and he hasn’t disappointed me. I have found those numbers in various combinations throughout the house—on the family room coffee table, on the kitchen counter, on his bedroom chest of drawers, and even on the bathroom floor. He has certainly gotten at least twenty-five cents worth of entertainment out of that little gift. Despite that he has new books to read, he’s been spending a great deal of time reading his old collegiate dictionary. Like the magnetic numbers, the dictionary seems to have legs, winding up in various rooms throughout the house as Alex roams around with it, too. While he received several gadgets for Christmas, he decided to spend some of his Amazon gift card money right away on a new electronic toy, a talking clock with calendar. I’m not certain why he wanted this because he knows how to read clocks and calendars, other than the fact he really likes clocks and calendars. However, he didn’t have any that talked to him, and he seems enthralled with this one. Besides the joy that clock seems to give him, another positive aspect was that he didn’t pester us at all after he ordered it, never asking when it would arrive or demanding that we track the package online. Perhaps Alex’s obsession with package tracking is disappearing; that would be welcome relief to us. As long as he’s finding things to occupy his time and keep himself entertained, Alex is happy, and so are we.

“So I concluded there is nothing better than to be happy and enjoy ourselves as long as we can.” Ecclesiastes 3:12

Sunday, January 9, 2011

Over the past several weeks, the water pressure in our house has gradually declined. This was especially noticeable every night when running the tub for Alex’s bath began to take longer and longer. Since his nightly bath is a routine that Alex eagerly anticipates, having to wait more time than he expected seemed to create some anxiety as he would pace in the bathroom and become agitated that it was taking so long for the water to fill the bathtub. After our local water company assured us that the pressure coming into the house was fine, a call to the plumber offered insight as to the cause of our water problem. He suggested that the filter on our water softener unit was likely clogged with sediment and told us to switch the unit to bypass. If switching the unit to bypass improved the water pressure, we had found the problem, but we’d also probably need to replace the water softener unit. With a simple flip of the bypass switch, our water pressure immediately and significantly improved, just as the plumber had predicted. The rush of water was welcome relief that we didn’t have a more serious problem, such as an undiscovered leak or pipes clogged with residue, and Alex was pleased that his bath water took much less time to be ready.

Some of the progress we’ve seen with Alex has been like that flip of the bypass switch. After dealing with some issue for a while, suddenly a switch figuratively turned on, and we saw immediate progress, much like that rush of water. While some of those sudden improvements were rather significant, others were minor, yet welcome nonetheless. For example, I tried to teach Alex how to use a drinking straw for years. No matter how many times I explained to him that how the straw worked and modeled for him how to use one, he would continually blow air into a straw instead of sucking up the drink in the glass. I had heard that you can teach children how to use a straw by taking them directly from the baby bottle to a straw, but I had missed that window of opportunity. Finally, I decided that using a straw would just be something he couldn’t do, and it really wasn’t important that he master this skill. About that time, I left sitting on the kitchen table a paper cup of cola with a lid and straw that I’d brought home from a fast food restaurant. A few minutes later, when I returned to get the drink, I found Alex sitting there, drinking down my cola happily, using the straw with ease. Suddenly, he had figured out how to do it on his own. Apparently, his desire to polish off my drink motivated him enough to use a straw. A similar sudden change occurred when we were able to solve his sleeping problems by putting him on the supplement melatonin. As I described in an earlier blog entry, “Sleep,” Alex had been a very good sleeper as a baby and toddler, but when he was five, he began having trouble falling asleep and staying asleep. After dealing with his wandering around the house, turning on television to entertain himself in the middle of the night, and moving from bed to bed looking for a place to sleep, we began giving him melatonin under his doctor’s supervision. Melatonin is simply a natural hormone that regulates sleep cycles. Unfortunately, some children do not produce enough melatonin in their own systems, causing sleep difficulties. Once they are given these safe supplements, their sleep usually improves dramatically. We found this to be true with Alex. The first night we gave him melatonin about a half hour before bedtime, we watched him get drowsy, and that night was the first night in several weeks that he slept peacefully through the night. Suddenly, a simple solution to the problem meant that all of us could get a good night’s rest. Thankfully, he continues to this day to sleep well with the help of melatonin supplements.

A similar quick fix to a problem came in the form of visual therapy. Alex had some balance issues when he was younger, and we’d notice that he would often tilt his head to look at things. Going up and down stairs was a major issue for him, and we’d often have to carry him on staircases because he was frightened to go up or down. On the recommendation of our family optometrist, we went to another optometrist who specializes in visual training. He put Alex in glasses that had prism lenses and gave him eye exercises to do to train his eyes to track together properly. After wearing the glasses and working on the exercises with their therapists as well as with him ourselves at home for a few months, Alex made rapid improvements. He no longer had difficulty navigating stairs or curbs, and he stopped tilting his head. The eye doctor agreed that Alex had made significant progress in a very short amount of time and told us that he no longer needed to wear the glasses or do the eye exercises. Even without these aids, Alex continued to maintain his balance and have his eyes work together properly, and we were pleased that this brief intervention made such a difference in his motor movements. Another issue that suddenly seemed to resolve itself after many years of trying was toilet training. In my blog entry “Toilet Training,” I described the myriad of methods we unsuccessfully used over several years to help Alex learn to toilet independently. However, within two weeks of starting methyl vitamin B12 injections, Alex finally was able to stay clean and dry around the clock using the toilet without any prompting from us. I truly believe that the B12 healed some damaged nerves and allowed him to experience the feeling of needing to use the bathroom so that he could go when he felt that urge. The mastery of this skill was such a blessing because we had agonized over it for years. Whenever I get discouraged that Alex hasn’t mastered certain skills, I try to reflect on these accomplishments and remember that progress isn’t always gradual. Sometimes God surprises us with sudden improvements that please us and remind us how powerful His healing touch is.

“Suddenly, the glory of the God of Israel appeared from the east. The sound of His coming was like the roar of rushing waters and the whole landscape shone with His glory.” Ezekiel 43:2

Wednesday, January 5, 2011

Alex has a love-hate relationship with the phone. While he has little interest in talking on the phone, probably because his receptive and expressive language skills tend to be weak, at times he enjoys eavesdropping on other people’s phone conversations. Without any visual cues to help him interpret what the person on the phone is saying to him, he struggles to respond to comments or questions. However, if he’s just listening to one side of the conversation and doesn’t have to participate himself, he seems to like being a bystander in that scenario. Moreover, he likes to ask nosy questions about who is calling and how long the caller is planning to talk, earning him the nickname of the Phone Police. If the conversation lasts for more than ten minutes, though, he often begins to fret that this phone call may break the world record for longest phone call, which he happens to know was done by a British man on September 14, 2007, during a call that lasted more than forty hours. I’m sure he must have Googled that one. Alex seems especially worried on those rare times when Ed, who freely admits that he hates talking on the phone, is on the phone, even though he’s much more unlikely to set a record phone call—unless he’s on the phone to our cable and internet provider— than I am since I love talking on the phone.

After eavesdropping on daily phone conversations between my mom and me, Alex developed a game he referred to as “Phone Call Points.” As I was chatting with my mom, I would hear him call out seemingly random numbers throughout the call. These numbers seemed insignificant until I questioned him and realized that he’d developed an elaborate system where I earned points for saying certain words and phrases and had points deducted for saying other things. For example, affirmative words and phrases, such as, “Yes,” “Uh-huh,” and “Yeah” earned positive points, whereas negative words and phrases, such as “No,” “Uh-uh,” and “Nah” caused me to have points taken away from my total score. One of the worst things I could say, points-wise, was “I don’t know.” Alex would not only deduct points, but he would sometimes let me know the error of my ways by whining or making the sound of a buzzer, similar to that on game shows where an incorrect answer is given. When I reached certain levels of positive points, he would often clap his hands and/or jump in the air to show his enthusiasm for my accomplishments in his game. Once I earned an elite level of one thousand phone call points, he would bring me a cloth stuffed apple wearing a mortar board, which was a high school graduation gift from my parents. I didn’t immediately understand why he viewed this as an award for my phone call status until I realized it said on the apple, “Congratulations!” I have to hand it to the kid: he’s really pretty clever.

After a few years of playing phone call points and actually participating in the calls by talking to my mom (albeit through a scripted routine where he knew what questions she would ask so that he felt comfortable answering them), Alex suddenly decided a few weeks ago that he didn’t want to have anything to do with the phone. He doesn’t want to talk on the phone, and he doesn’t want me to talk on the phone any length of time. Since it’s not worth triggering the wrath of Alex, I’ve allowed him to think that I don’t talk on the phone anymore, but I sneak off and make calls without his hearing me. When I’ve asked him what has changed his attitude toward Phone Call Points, he acts annoyed and tells me that in 2008, I got two thousand phone call points, which was too many. I’m surprised he let me continue the game for two more years. However, I suspect that this sudden phone boycott is simply another phase he’s going through that will disappear in time. In the meantime, I guess we should count our blessings that unlike most households with teenagers, we don’t have to worry about Alex tying up the phone, talking for hours. Instead, he’s probably busy inventing some other game to replace Phone Call Points, and I’m hoping that he figures out a way for me to win that “Congratulations” apple award again soon.

“The Lord hears his people when they call to him for help. He rescues them from all their troubles.” Psalm 34:17

Sunday, January 2, 2011

This past week, as the year 2010 came to a close and 2011 began, the media provided a variety of reviews and highlights of the year. In looking back over our 2010, Ed and I would agree that 2010 has been one of our best years because Alex made significant progress in several areas. To summarize 365 days, our highlight list would include—as any holiday newsletter does—a health report, a description of recreational activities, and a mother’s proud accounting of her child’s accomplishments. Of course, when that child has autism, the highlights take on an unconventional tone, yet we treasure them nonetheless. To begin with, other than the issues associated with autism, Alex continues to be blessed with good health. His physical exam and annual blood tests showed that he is quite healthy, and his eye exam revealed that he still has perfect 20/20 vision. In addition, his visits to the dentist are always causes for celebration since he has never had a cavity in his life. Additionally, he had an evaluation with a psychologist, who confirmed that Alex does, indeed, have autism. We had not had him assessed since his initial diagnosis at four; however, we were not surprised by the outcome of the testing, and Alex seemed to find answering the questions entertaining. In fact, Alex likes going to any appointments because he finds them interesting.

While Alex’s primary pastimes still revolve around computers and books, he also expanded his activities by going to the playground and playing basketball with Ed. With practice and improved motor skills, his shooting ability got better over the summer. While he took pride in working on his basketball game, he took miniature golf less seriously but enjoyed his time on the course anyway. Despite constant reminders from Ed to look at the ball, Alex had more fun watching everyone else playing miniature golf. With his improved behavior and social skills, Alex enjoyed going to restaurants regularly. With some online research of menus and nutritional information ahead of time, we were able to find meals for him that fell within his gluten-free and dairy-free diet yet allowed him to dine out. Another outing for him was attending concerts this year. He was able to see two jazz concerts, two band concerts, and two American Idols—Ruben Studdard and Kris Allen—perform live. In addition, he looked forward to weekly music therapy sessions, where his favorite activity is playing keyboards. This year, he also continued his interest in games and game shows. He especially likes Deal or No Deal, which he plays on the computer with reckless abandon, always rejecting the banker’s offers with “NO DEAL!” Similarly, he enjoys playing Texas Hold ‘Em poker games with the same daring attitude, betting large amounts and scaring the computer opponents into folding their hands. With his math skills and his interest in money, perhaps a career as a professional poker player is in his future. At least he doesn’t jump up and down anymore when he has a good poker hand.

Alex has reached some interesting milestones and made some special accomplishments. After obtaining his official state identification card and registering to vote, he participated in his first November election, which was really important to him because he is very politically aware. Another sign of his maturity was that we finally trusted him enough to let him ride in the front passenger seat when traveling with one of us. In addition, we disengaged the child locks on the car doors, no longer concerned that he might open a car door at an inopportune time. He also learned to do a variety of household chores this year: pushing the cart at the grocery store, setting the table for dinner, helping cook meals, and shoveling snow. Not only was he more cooperative about following directions, but he took pride in doing a good job. In a less significant change, he expanded his limited wardrobe from knit shorts, t-shirts with short or long sleeves, and sweatpants to include track pants. Of course, his dislike of clothing with words or logos meant some hunting to find these athletic pants without any brand identification, but once we found them, he wore them happily. As far as obsessions, his ran the gamut this year from making extensive lists in composition notebooks to tearing up toilet paper and strewing it through the house to reading medical books so thoroughly we debated taking them away from him. If the professional poker player gig doesn’t work out, maybe medicine is a career possibility instead. After all, he would enjoy asking people their birthdays, ages, and weights, and concern for their health would be good conversation material for him. In all seriousness, we are pleased with the improvements Alex has made this year and feel blessed that most of the time he is a pleasant and happy young man. When Alex is happy, we’re thrilled. We look forward to seeing what the next year brings and how Alex develops with time and maturity as well as the grace of God.

“And it is a good thing to receive wealth from God and the good health to enjoy it. To enjoy your work and accept your lot in life—this is indeed a gift from God. God keeps such people so busy enjoying life that they take no time to brood over the past.” Ecclesiastes 5:19-20

About Me

Pam Byrne is the mother of an adult son, Alex, who was diagnosed with autism in 1996, at the age of four. Since then, she has researched autism and pursued various therapies to help him reach his full potential. Along with her husband, Ed, she coordinates Alex's support services, including behavioral, recreational, and music therapies and respite care. A graduate of Valparaiso University, she is a retired middle school English teacher. She lives in Valparaiso, Indiana, with her husband and son.